Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
I'm new here... hi. I was diagnosed with M.E. about 5 years ago. I'm really struggling, emotionally.
Recently I saw a neurologist who, after reviewing my MRI, confirmed that I do not have MS (that's what they were testing for). Nor do I have anything wrong neurologically.
I cried at the diagnosis. I was actually hoping I had MS! I though I could get treated and maybe feel better. Even remission was in the back of my mind. But no; I don't have MS.
I started doing more in-depth research on ME and many articles say it's a neurological disease. I don't know how I can have it then. Is it something the nuerologist wouldn't have seen?
I have 99% of the symptoms for ME. I have all of the criteria as outlined in the new Canadian Consensus Document for ME/CFS. I don't understand what's going regarding the neurological part. If the specialist didn't see anything - mind you, he is an MS specialist and was looking only for that - do I have ME or not?
I'm frustrated. Tired. Scared. Angry. There seems to be no help out there at all for ME in Canada.
To be diagnosed, you need to be sure to rule out many other things... this can be a long and complicated process. Often, orthostatic intolerance goes along with CFS. I was diagnosed with POTS via a tilt table. Orthostatic tolerance can be somewhat treated, so that is at least one thing that helps.
Dr. Ron Davis at the Open Medicine Institute in CA is doing a lot of great new research into CFS. I believe he will find a way to help us soon.
https://www.omf.ngo/
I know it's so hard, but keep fighting and hopefully there will be better days ahead!
Kaubisch Chiropractic
207 6th St S Ste A
Walker, MN 56484
I have only had four months of treatment and I am more active than I have been since I became ill. I'm able to go to physical therapy now to help regain the ability to do more than lay in bed all day. I can't recommend seeing this doctor enough...
Does anyone know what is a neurologist supposed to see on an MRI to indicate M.E.?
I'm Canadian so unfortunately I don't have access to American docs. Too bad. I won't get to see the neurologist again. He focuses only on MS and he said he didn't know much about M.E. In Canada the wait times to even see a specialist at all are ridiculous and sometimes just not available at all. Makes it super frustrating as I feel like I have to be both patient and doctor too.
Three years ago I had a brain MRI and said it was abnormal and I had lesions. The did a spinal tap looking for MS but didn't find it and the nuerologist did nothing after that; not offering a diagnosis. It was about a month later when I was finally diagnosed by Dr. Chia, one of the top CFS specialists. He is located in Torrence. CA. I don't know of any in Canada but
A couple months ago it was done again and I have more. There is a website that lists doctors in the world who specializes in CFS/ME but unfortunately I can't think of its name right now
I was diagnosed with CFS. I never saw a neurologist. (It doesn't sound good that
you had brain lesions and were sent away from that doctor. Sorry to read about
that) The person who diagnosed me was an alternative doctor. Later I was
treated by a naturopath. I had to pay out of pocket but my insurance covered the labs. Many times this is diagnosed by naturopaths or doctors who practice alternative medicine. They use such things as homeopathy, detoxification, sometimes herbs and other modalities. Are there any groups of doctors like this near where you live? You might want to look at the book, "From Fatigued to Fantastic" by Dr. Jacob Teitelbaum. It's available on Amazon. I took some of his supplements for a while and I did learn a lot about various symptoms we have and treatments. Good wishes to you with finding some answers and treatment.